I wish Dad did not die like this

Rapport 10 March 2024

Article by Suzanne Venter

Her father’s painful last journey changed Suzanne Venter’s perceptions about assisted passing.[2]

‘We are so glad his/her suffering has now passed.’

How often have I not heard these words? Especially after a person dies from cancer. I usually ‘painted’ a picture in my mind of someone lying in a bed, surrounded by close family and friends, and who then peacefully breathes his or her last.

What a farce! In reality, it does not happen like that at all.

Our nightmare started around Christmas in 2022.

For the first time in years, my dad would be joining me for a holiday. And this time together with his future son-in-law, nogal, because his oldest daughter, that’s me, had found love again in her forties, this time with her university sweetheart, Gerrit Nel.

My mother had passed away in 2010.

Gerrit and my father, Ben Venter, got along splendidly. My dad had been a teacher and sports coach his whole life.

From early on, my young brother and I accepted the fact that we had to share our father with other kids. He had a special gift to make any child feel special and loved.

He was very successful as a coach at school sports level; one of his ‘children’ was the Protea cricket star ‘Vinnige’ Fanie de Villiers. In the eighties, Fanie was a member of the cricket team of Heidelberg Volkskool, a team that nobody gave any chance, but my faither’s unique coaching style motivated them. Not only did this team go on to top the league, but also won the coveted Director’s Trophy.

I most definitely inherited my ability to endure and persevere, to strive for success, from my dad. And we both loved joking and laughing.

‘Keep the dull side down,’ was his advice when saying goodbye to people.

On 24 December 2022, I picked up my dad at the retirement home where he stayed, to spend Christmas with Gerrit and me on the farm, before we would drive down to Jeffreysbaai.

We really looked forward to this special holiday.

But something was not quite right.

At first, our GP thought that my dad had some or other intestine obstruction and treated him accordingly. I really prayed that he would get better, but finally, I had to rush him back to a hospital in Pretoria on 29 December 2022.

Initially it did look as though it could in fact well be an obstruction. At midday, test results indicated that it could be more serious. In the late afternoon the nurses told me that there was a possibility that it might be cancer.

‘No, please not this.  Can’t I have just this one holiday with my father?’ I kept on thinking.

But, yes, instead of going off to the sea, we had to make our way to the ICU. It was very confusing; there was a surgeon and a urologist, but no one who could really say what was happening. In the meanwhile, I could hear my father screaming of pain in his room while the nursing staff was attending to him.

At six ‘o clock that evening my brother and I received the news...

‘Your father is very sick. It is cancer and it is everywhere. There is nothing that we can do for him. He is going to die. His kidney function is 4%. Ideally, he should be on dialysis, but it isn’t an option, given his low blood pressure. We can’t say what type of cancer it is and where it originated. But it is very aggressive and painful. The best we can do, is to try and keep him comfortable.’

Those were the words of a surgeon in one of those ‘suffocating death meeting cubicles” one finds in die ICUs of hospitals. Where all hope disappears behind closed doors, while the sun is shining outside, people stress about work, money or vacations and simply continue with life.

Just like that.

Bowled out without scoring.                                                    

An urologist had joined the surgeon and the internist.

‘Does your dad have a living will?’ one of them asked.

‘What?’ we replied to that question.

‘Must we resuscitate him? When his heart fails, must we resuscitate him or allow him to die?’ the surgeon asked.

What the fuck! Only then I realised that this issue was the most important reason for our meeting. The diagnosis itself was a secondary matter.

‘No,’ I said, before I could even think about it. No, because barely three meters from the door of the small room, my father was crying because of the pain that was devouring him. He did not deserve this. I wanted it to stop!

My brother was as pale as death.

He and my father were very close; my dad’s special name for him was ‘Ou maat’ (old chum’). He then said that the living will had to be discussed with his old chum.

I tried to explain that we did not want our dad to suffer when there were no plans or any hope left.

‘Will it be possible to arrange that he and I can watch the Bulls here in ICU on Saturday? They are playing when it is not visiting hours,’ my brother asked, out of the blue.

‘Of course,’ everyone said, not everyone initially being quite sure what rugby was and probably thinking it all rather bizarre.

Devastated, and accompanied by the ‘messengers of death’, we went to my father’s bed to discuss the matter with him.

It was a very difficult conversation, not really the way it happens in the movies.

No one knew how or where to begin. I then bit the bullet. ‘Dad, Dad has cancer.’

My poor dad did not move, and I immediately sensed that had heard me, but did not realise what exactly I was telling him. He thought that there was still some hope of a recovery.

‘Oh,’ my dad said, his eyes turned down and his hand on his chest, the way he always did when he was moved.

‘Dad ought to have dialysis, but actually Dad can’t, because Dad’s blood pressure is too low and the cancer has progressed too far for treatment.’ Something like that came out of my mouth.

My brother then explained that our father had to decide on the way forward. Not that there was a way.

‘I think that we should go for the dialysis,’ my father said hopefully. Only for the surgeon to crush his hopes with the words ‘It can’t.’

Oh, it was such a mess. Up to this day I do not know whether my father realized that evening that we had told him he was going to die. What was running through his mind.

The only thing that I wanted to do, was to hold him tight. But he was hurting and upset and we left him to rest.

Right now, I am sure that at least one of you reading this will think: ‘Tell him that you love him, say your goodbyes, tell him everything that you ever wanted to say. This is your last chance!’

Sadly enough, this, too, does not happen like in the movies.

After this devastating news, so many people told me that we at least knew that our father was dying, and we now had the chance to say goodbye. Others said we are so ‘lucky’, because we knew that our father was dying, so different from those who did not know and could not say everything they wanted to say. There were even those who argued that it was better to suffer for a short rather than an extended period.

All of this is rubbish.

My brother’s church minister came to visit my father the following day to talk with and pray for him. After this he was more at peace and messages poured in from far and wide.

All the attention really helped, but it never improved the situation.

My dad’s two granddaughters could not come and give him a last hug. He could not sit, stand or walk where he wanted to. The only thing he could do, was to lie down and wait for death.

Within days the pain became worse.  We sat alongside my father’s bed, powerless, and watched his blood pressure drop, his heartbeat slowing down and his oxygen level flattening.

‘Help me, please help me!’ my father shouted a couple of times as I arrived at the hospital. I would rush to him, but then there was nothing I can do.

At other times, I would just run outside to take a breath or two when things became too much. Then I thought: my poor father doesn’t have that option. He just had to lie there, left to the mercy of others, while all the time it became more painful and difficult. Surely, this couldn’t be right? This could not be the most comfortable way possible?

I assumed that given the fact that my dad was terminally sick, we would receive regular feedback and advice, but we remained in the dark.

For a while my father could still eat small portions of food and take sips of water, but after a week or so, he could not swallow at all. His digestive system did not really function properly, and chats and comprehension dwindled.

He was tube-fed through his nose, which irritated him, and he plucked it out. Then his hands were tied to the bed.

‘No, man, surely this cannot be comfortable? It’s cruel,’ I kept thinking, over and over.

I could not stand the fact that my father was suffering and enquired from the nurses what the next step would be. But there was nothing like that.

Something like that ‘nice morphine trip’ that dulls all pain until you fall asleep forever, is also a farce, an illusion, a myth

On the contrary, all that my dad received was a pain sticker which released an agent similar to morphine, just enough to lessen the pain and keep his heart beating.

How ironic, I thought, everyone is pitter-pattering around to ensure, please, that somebody who ‘must’ die, does not die. The medication which was administered to my father by means of a drip, was meticulously measured correctly, otherwise it could also lead to his death.

I had never imagined that it was something I would say, but I had reached a point where I wished that my father would die. That his suffering could end!

When I finally managed to get hold of the internist and ask him if we could not give my dad morphine or something, his answer to me was: ‘Your father does not have so much pain.’

Idiot, I thought. You are not the one sitting at his bedside day and night.

Of course, I was also beyond myself. The doctors are under immense pressure and the whole issue of assisted death is very sensitive. As a matter of fact, to me it felt as if everyone was taking so much care to treat this sensitive matter with the necessary sensitivity, that they became totally insensitive to the reality itself.

‘I cannot give your father morphine. It would cause his death, and I could be charged with murder,’ the physician explained.

I kept on thinking, over and over, that I had no idea how we came to this point, but we did. There was no escaping this.

The physiotherapist recommended that we touch my father as often and as much as possible, because touch is good for someone on his or her deathbed.

There were many times that we rushed to the hospital, thinking that the end had come, but then my father stood firm. It was unbelievable to see how a body kept fighting for survival.

On 16 January 2023, 18 days after my father’s diagnosis, he eventually started receiving morphine. Now it was ostensibly the right time. It was on my 46th birthday.

My dad was very meticulous about birthdays and never ever forgot someone’s birthday. When I walked into his room, I kissed him on his forehead, took his hand and thanked him that he stuck it out until my birthday.

Suddenly his lusterless eyes lit up and he peered intensely into mine. He couldn’t speak any more, but no words were needed.

It was a precious, holy moment and a short while later I went to the hospital’s chapel and prayed that my father’s suffering should now come to an end and that my mother should come an ‘fetch’ him.

On 17 January 2023, just after eight ‘o clock the morning, my father’s heart stopped beating.

Minutes before my brother and I would have been at his bedside.

For the first time I truly realized and understood what the words ‘I am so glad his suffering is over’ meant.

I decided to write this article because it is crucial that we talk about a ‘living will’, death, suffering and mercy death. My dad did not deserve to suffer the way he did. At the same time, I cannot say with true conviction that he would have chosen mercy death if he had the choice, but I think that that option, given the correct circumstances, is something which must be investigated.

No one can be ‘comfortable’ while he is suffering, and my father most definitely did not deserve the terrible suffering that came his way. Do not allow your hands to be tied behind your back like mine were.

[1] This is an English translation of the Afrikaans original, published in Rapport on 10 March 2024 under the title ‘Ek wens Pa het nie só gesterf nie’ [‘I wish Dad did not die like this’], and published in Netwerk24 on 10 March 2024 under the title ‘Pa se krete laat my anders dink oor genadedood’ [‘Dad’s screams make me think differently about mercy killing’].

[2] Not by the translator, Prof SP Olivier, dated 18 July 2024: Current terminology used in academic articles in English is “assisted self-administered death” and “doctor-assisted and administered death”, the latter commonly known as euthanasia. Afrikaans has drawn a useful terminological distinction between ‘bystanddood’ [assisted death] and ‘genadedood’ [euthanasia] in its discussion in respect of these related matters.